You Are Only One Decision Away From A Totally Different Life

"You Are Only One Decision Away From A Totally Different Life."  A few weeks ago, a high school friend of mine posted this quote on Instagram.  My heart stood still when I read it.  It was a scary reminder of that one decision I made on New Year’s Eve, twenty years ago.

I was a bright, young 27-year-old, living on my own in San Francisco.  I had worked my way up to a managerial position at technology staffing company and had a promising future ahead of me.

It was New Year’s Eve and I was tired.  I had worked a full day at the office plus I had spent the entire week before snowboarding in Tahoe.  I just wanted to go to bed, but I got a call from a friend who suggested we go out to the local bars.  I had a decision to make.  Do I want to just stay home and relax or go out and party with millions of other people on what is widely known across the world as the biggest party night of the year.  Going against my better judgement, I chose the latter.

My memory of that night is sketchy at best, but what I can tell you is that at around 1:30 am I flew out of the 3rd story window of an apartment building and landed on the street below.  The how this happened is not as import as the why it happened.  The why is because I made one poor decision after another that night, starting with going out to party in the first place.

My life has been radically different since January 1, 1997.  The broken bones, fractured skull, hearing loss, facial nerve paralysis, and permanent nerve damage are nothing in comparison to the severe traumatic brain injury I sustained.  It is an injury that cannot heal and one that has made every single day of my life a struggle.  The memory loss, forgetfulness, chronic fatigue, daily physical pain, occasional double vision, and aphasia that often accompany a TBI are all things I can manage, but it is the mental and emotional pain it causes the hardest to live with.

A TBI changes you.  It changes how you think and how you act.  It alters your ability to know right from wrong.  It takes away your self-control.  According to the website brainline.org, “individuals with TBI are often unable to function well in their social roles because of difficulty in planning ahead, in keeping track of time, in coordinating complex events, in making decisions based on broad input, in adapting to changes in life, and in otherwise ‘being the executive’ in one’s own life.  With TBI, the systems in the brain that control our social-emotional lives often are damaged. The consequences for the individual and for his or her significant others may be very difficult, as these changes may imply to them that ‘the person who once was’ is ‘no longer there.’ Thus, personality can be substantially or subtly modified following injury. The person who was once an optimist may now be depressed. The previously tactful and socially skilled negotiator may now be blurting comments that embarrass those around him/her. The person may also be characterized by a variety of other behaviors: dependent behaviors, emotional swings, lack of motivation, irritability, aggression, lethargy, being very uninhibited, and/or being unable to modify behavior to fit varying situations.”

In in some ways it is like being addict to a controlled substance except you do not have the option of quitting.  I have no impulse control.  I make poor decisions, I often get taken advantage of and I am left with severe depression, anxiety and PTSD.

Living with a TBI is a very lonely existence.   If you are lucky, like I am, you will have a strong family support system that will be your guiding light through the darkest parts.  My beacons of light have been my mother and my husband.  I have read that it is estimated that up to 90% of marriages end when a spouse sustains a brain injury. While I personally believe that number to be very inflated, almost all of the TBI survivor's I personally know who were married prior to sustaining a TBI are divorced.  Unfortunately, you can say the same thing about friendships and TBI.

I have lost more friends over the past 20 years then I care to count.  Even long time childhood and college friends.  Even the friends who swore they would never abandon me, and even the ones who have been through traumatic events and have faced unfathomable adversity themselves have given up on me and it isn't any fault of their own.  I manage to drive them away.  Everyone in this world has a breaking point, EVERYONE, and I now have the unique ability of brining it out in anyone I get close to.  I am like the Hulk but instead of smashing things to oblivion with my fists, I destroy them with my words.  Words that I can never take back.  Physical pain is temporary but emotional pain is permanent.  It is because of this that I no longer allow myself to get too close to people in fear that I will eventually hurt them and subsequently myself.

I can go on and on about this - heck, I can even write a book about what it is like to live with a broken brain ;), but that is not what this post was intended for.  I am writing this as a plea.  A plea to all the people out there, more specifically our teenagers and young adults, who will be faced with choices this coming New Year’s Eve and every other night of their young lives for that matter.

Don't make the wrong choice like I did!  This is the rest of your life.  Girls... no guy is cute enough; guys.... no girl is hot enough.  No party is worth it.  No beer is worth it.  No drug is worth it.  No shot is worth it.  No holiday or celebration is worth it.  It's just a night, but if you make the wrong decision it can be your last night or the last night you have any chance at a normal life.

Does this all sound too dramatic to you?  Then just ask my mother how dramatic is was for her to receive a phone call at 5:00 am on New Year’s Day informing her that her only daughter who lived 2500 miles away from her was in the ICU of a hospital fighting for her life.  Ask her how dramatic it was to rush to the airport, get on a plane and fly across the country for five and a half hours not knowing if her daughter would still be alive when she landed.  You are not just one decision away from a totally new life, you are also one decision away from giving a whole new life to the people you love too.  So please, choose wisely!

Aphasia - My Arch Nemisis

Aphasia is a communication disorder that results from damage to the parts of the brain that contain language (typically in the left half of the brain). I fractured my skull in two places, the left temporal lobe and the base of my skull.  I have Aphasia and it sucks.  Lots of people with TBI have it.

I can't remember words but it's not once in a while like when you have a word on the tip of your tongue and you can't get it out - for me it is constant.  It makes it really hard for me to have a conversation with people unless I take medication that helps me focus and lifts the brain smog!  I call it brain smog because it's more of a pollution in my brain from injury rather than "brain fog" because there is nothing natural about it.  Unfortunately, I can't take the medication everyday because if I do, I will develop a tolerance to it and it won't work.

 This is an off week for me.  I can't take my brain smog medication this week.  I don't know what I was thinking but I scheduled two meetings for today.  Normally, I try to avoid all social situations on off weeks, but I had to go meet with an ABA consulting company to start the long and arduous process of getting my health insurance company to approve behavioral therapy for my autistic son.  I had a hard time filling out the numerous forms and I couldn't concentrate.

After my meeting with the ABA company, I met with a nutritionist who specializes in children with disabilities.  It was a nightmare.  I couldn't remember words, I couldn't get my thoughts out correctly, and I just could not think.  I wanted to explain to her why I was having such a hard time talking.  I ended up telling her to go to my website when I left so hopefully she will put 2 and 2 together.

I have seriously thought of making cards - like business cards - that I hand to people when I first meet them that tells them what aphasia is and that I have it. Then maybe they won't think I'm stoned or just an idiot.

I tend to tell people who I just meet that I have a brain injury as soon as I possibly can.  I often see them staring at my partially paralyzed face with this look of wonder.  I can see the thoughts running through their minds, "I wonder what happened to her," "I wonder if she had a stroke."  It's like they have a virtual thought cloud above their heads.  I want to end their wonderment.  I also want them to be slightly compassionate towards me too because I feel ugly, I feel deformed and I feel totally self conscious.

I also prefer to write rather than speak, which is why I choose to communicate via text or email more so than talking on the phone.  For some reason speaking on the phone is harder for me than speaking to someone in person.  I just can't concentrate, my mind wanders.  I can't speak on the phone while I am doing something like cooking dinner.  I want people to know that they shouldn't take it personally if I don't call them.   It's not you, it's me.

Writing is somewhat easier because if I don't know the word I am trying to remember, I can just stop and take a break or search the Internet by doing a Google search on, "what's the word for ......."  Believe it or not, Google usually comes through for me.  But that doesn't mean I don't have difficulty writing.  On off weeks I simply cannot write my book.  It just doesn't make sense and I get angry and frustrated and that makes it worse.

I am controlled by my TBI.  No matter how much I fight it and try not to let it control me, I always lose.  So, I stopped fighting it, and now I am trying to work with it.  I'm trying to find some harmony with it, but it isn't easy.  It is just the reality of life with a TBI.